Statewide Advisory Council on PANS and PANDAS Diseases Convenes; Names Filler-Corn Chair

On Tuesday, September 26, 2017, the Advisory Council on Pediatric Autoimmune Neuropsychiatric Disorders (PANS) Associated with Streptococcal Infections and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANDAS) convened for the first time, just outside of Richmond. As one of its first acts of business, it named Delegate Eileen Filler-Corn (D-Fairfax) chair and Senator David Suetterlein (R-Roanoke), vice chair. In addition to elected officials, the council includes doctors, researchers, nurses, parents and advocates. Members come from across the Commonwealth and will convene on periodically throughout the next four years.

“I was honored to be elected as chair of the council by the members and am appreciative of the trust they have put in me,” said Filler-Corn, commenting on her election as chair of the committee. “It is my hope that by working together across party lines, across disciplines, and across the Commonwealth, we can promote awareness and research of these insidious diseases,” she added. The Advisory Council was established by Filler-Corn’s 2017 legislation in the General Assembly, which passed near unanimously out of the House of Delegates and the State Senate.

PANDAS occurs when children, after an infection such as strep throat, almost immediately develop tics, severe anxiety, obsessive compulsive disorder as well as many other behavioral symptoms. PANS is a broader term, referring to the same onset of symptoms whether or not a strep infection triggered it.

After establishing council bylaws and electing a chair and vice chair, the council then heard two presentations by fellow board members. First, Dr. Susan Swedo presented the scientific aspects of PANS and PANDAS. Dr. Swedo is the Chief of the Pediatrics & Developmental Neuroscience Branch at the National Insititute of Mental Health (part of the National Institutes of Health. She and her team first identified PANDAS and PANDAS. More recently, Dr. Swedo, along with Dr. Jennifer Frankovich of Stanford University and Dr. Tanya Murphy of the University of South Florida, St. Petersburg developed the guidelines for treating PANS and PANDAS. Following her presentation. Jan Kirby, a registered nurse and patient advocate at VCU Children’s Hospital gave the advocacy perspective.

Following the presentations, the council agreed upon a work plan and future meeting dates. The council is expected to meet again this November, and periodically through 2018. The council will also present an interim report to the Governor and General Assembly on December 1st, 2017.